Hi everyone. I’m very new to this and could do with a bit of help as I feel there’s a lot to learn and I want to be able to help myself. Earlier this year I realised I had a swelling on the front of my neck. I was put on the cancer pathway and following an ultrasound was told it was a benign cyst but I also had a suspicious nodule on the other side of my thyroid. No cancer showed in the biopsy but they couldn’t be sure what it was and because of the size of the cyst I decided to opt for a total thyroidectomy. It was done really quickly, June 13th, and I went straight onto 125mcg levothyroxine. I haven’t had results for the nodule yet.
Both times I’ve received two different brands of tablets for my prescription, 100mcg of one and 25mg of another, eg crescent and teva. Does this matter?
My first blood test to check if I’m on the right dose of levothyroxine is Thursday at 9.40 am. From reading on here I think I should not take my tablets before my blood test. Have I got that right?
Thank you for reading xx
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Babyelephant-
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helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Thank you, I’ll have a read and try to take it all in! Also, will the health centre just test for the TSH level? Would I be best to do my own test for vitamins etc? I only had one thyroid blood test at the beginning of all this and haven’t really had a chance to get my head around everything I’ll need to know.
Just a thought - do you have any blood tests detailing your Free T3 and Free T4 prior to surgery as it reads as though you were pretty much symptom free earlier this year with a swelling causing all these investigations.
It is very early days and it will take time for your body to settle back down and you may find your dose of T4 changing several times before you stabilise.
No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels so suggest you ask to have your ferritin, folate, B12 and vitamin D blood tests run -
and we can advise ' where optimal levels ' is likely to be -
for someone - without a thyroid and taking thyroid hormone replacement -
and with some NHS ranges too wide to even be sensible - we need to aim for optimal :
A fully functioning working thyroid would have been supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. -
with T3 - the active hormone - being around 4 x more powerful than T4 - Levothyroxine.
T4 is a storage hormone that needs to be converted in your body into T3 the active hormone as and when needed. The brain and heart taking the lions share of T3 with the thyroid a bit like the gear system in a car and synchronising your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Some people can get by on T4 only medication.
Some find that T4 seems to stop working at some point in time and find that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they then can restore T3/T4 hormonal balance and feel better.
Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find their health restored better talking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid and derived from pig thyroids - dried and ground down into tablets referred to as grains.
We all start off on T4 thyroid hormone replacement as it is the easiest option to manage -
and some people find different brands ' different ' - so yes - it is something to be aware of
and yes -
take your dose of T4 after the fasting blood draw - so having left around a 24 hour window from your last dose of Levothyroxine.
If taking any supplements containing biotin this needs stopping around a week before the blood test as biotin can effect blood test results and any supplements you are having measured need to be stopped a good few days before a blood draw so we measure what our body is holding and not that just ingested.
Any new information deserves a new post - as this patient to patient open forum - supported by the charity Thyroid UK - thyroiduk.org - and can get very busy so we try and answer as fully as possible every post as it arrives on a daily basis.
We can all read what is being written so there is no need to keep repeating yourself -and we can look back at previous posts to see where we up to in helping you in your journey back to better thyroid health.
If you get lost reading around simply press the Profile button - alongside the Alert - Chat - Menu icons and this will take you back to your Profile page and all you have ever written and replied to on the forum -
similarly if you want to read about anyone - just press their icon alongside their name and this takes you to all they have ever written on this forum -
and when replying to anyone please ensure you reply within their reply and their name appears in print as you reply - as then they get notified that they have a message :
Think that's all for now - as it's a lot to read !!
Hi pennyannie. That’s all so helpful, thank you. As far as I know my thyroid function was only tested once in March and only TSH so I won’t really have anything to compare with now I don’t have a thyroid. I think I feel pretty good really but I do get really tired and cry quite a lot!
I’m going to carefully read everything you’ve written, thank you again. I’m looking forward to learning 😊
Ok then - it is an emotional time - don't bottle things up - this is safe space and you can off load and ask anything that is concerning you - and just go one step at a time.
One book that I still use as' my go to ' is that of a Barry Durrant-Peatfield - who resigned from his medical career and decided to write to try and equip patients better to advocate for themselves -
it is an easy read compared to any other medical book I opened - and though we haven't our thyroids the content is relevant as we need to know what we have lost and compensate accordingly - Your Thyroid and How To Keep It Healthy :
Thyroid uk - the charity who supports this forum has a library page where there are several books you may find of interest - thyroiduk.org
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